LINCOLN — Derek Caster, a 30-year-old Nebraskan with Duchenne muscular dystrophy, worries that proposed changes to how the State of Nebraska administers a Medicaid waiver for the aging and those with disabilities could be the difference between life and death.

At issue is a 238-page proposal from the Nebraska Department of Health and Human Services seeking to cap the number of hours for which live-in, often-family caregivers can be reimbursed under Medicaid for providing in-home care such as to Caster or others. The proposal would also place an annual cost limit on reimbursable care based on a DHHS estimate of nursing home costs statewide.

Caster, other waiver recipients, caregivers and advocates for the elderly and people with disabilities have been among many rallying at the Nebraska State Capitol and urging lawmakers to support them.

“If we get a drop in our quality of care, I know for a fact I would be dead,” Caster said at a Capitol rally last week.

‘A Deadly Direction’

Nebraska Gov. Jim Pillen supports the proposed DHHS caps and included a DHHS-estimated $14.12 million cut to the Medicaid waiver program in his proposed state budget cuts.

In total, the Pillen budget proposal would cut DHHS’s budget by $152 million. The changes to the “Aged and Disabled Waiver” are among the largest health-related cuts. Lawmakers must balance the budget by late March as they face a projected $471 million state shortfall.

Caster said the current in-home care he receives from his parents, Tammy and Darin, is “exceptional,” in part because they understand his needs and how best to care for his condition, which causes muscles to get weaker over time. 

If those changes result in him having to constantly teach strangers his care routines, including the likelihood of staffing turnover, Caster said, could cause his level of care to “slip detrimentally into a deadly direction.”

“A long, quality life is the right of every disabled Nebraskan,” Caster said.

Caster said if DHHS, Pillen and state lawmakers spent one or two days in his shoes, or those of his parents, they would understand why having a say in how people are cared for matters, including in-home care.

Balancing The Budget

State Sen. Ben Hansen of Blair, a previous chair of the Legislature’s Health and Human Services Committee, was among a handful of lawmakers who attended the rally. He said it was good to hear from people who are concerned, and he isn’t surprised.

“With uncertainty comes fear, and that’s what this kind of created,” Hansen told the Examiner.

Hansen, a registered Republican, the same as Pillen, said he has priorities about how to spend taxpayer money. Among Hansen’s highest priorities is helping to take care of people who can’t take care of themselves or of people whose families and churches can’t help alone.

The Blair senator said there are many other places to cut to balance the budget, which he said should occur first and not on the “backs” of waiver recipients, families and caregivers.

“These are the people that I want to prioritize above all else first,” Hansen said. “To see us deprioritize them really concerns me.”

State Sen. Dave Wordekemper of Fremont, another Republican in the officially nonpartisan Legislature, also attended, as did Democratic State Sens. Danielle Conrad of Lincoln and Margo Juarez of Omaha. 

Wordekemper said the state needs to look at the Medicaid waivers and how they’re evaluated to better support individuals. 

He said families save the state money by caring for loved ones at home.

“I understand we have to be fiscally responsible, but, at the same point, we have to be realistic and try to do no harm,” said Wordekemper.

‘Doing Nothing Wasn’t On The Table’

The changes come as part of a five-year renewal period for Nebraska’s Aged and Disabled Waiver, which is set to expire July 31. Tony Green, director of the DHHS Division of Developmental Disabilities, said the goal of the changes is “stabilizing” the program and ensuring sustainability.

By mid-2025, the waiver had reached annual costs of $383.6 million, compared to $91 million in mid-2016. That’s an average annual increase of about $29.3 million.

Absent changes, Green said DHHS might have to implement a waiting list, limiting how quickly some families could access the waiver.

“The option of looking at that data and seeing those costs continue to rise at such a drastic rate, the option of doing nothing wasn’t on the table,” Green said in a one-on-one interview.

Pillen and his state budget administrator, Neil Sullivan, have also argued the costs have risen too much. Pillen said the state was “paying grandmas to be grandmas,” while Sullivan had said the state was paying “four times the cost of nursing homes so one person can stay home.” 

Either situation would likely be an outlier, according to DHHS’s own data, with neither Pillen nor Sullivan describing the care individuals in those circumstances would have been receiving. Of about 10,000 waiver recipients, 255 of them had received reimbursable care above $162,000.

The DHHS proposal would also limit families to up to 40 hours of in-home care, down from a current cap of 112 hours. Up to an additional 30 hours could be allowed, but those hours would need to be covered by someone from outside the home, such as from a private provider. 

DHHS Is Reviewing Public Comments

Advocates say they rely on the reimbursable hours so they can provide needed 24/7 care at home care without having to also juggle a job, or two, outside the home. Most of the reimbursements are minimum wage, now $15 an hour.

Outside care providers might pay workers $30 to $45 an hour, advocates said last week, leaving some to question whether the DHHS plan would actually save money.

Advocacy organizations and waiver recipients also criticize the DHHS estimate for nursing level of care as a general level and not the heightened care that many individuals on the Aged and Disabled Waiver might need. DHHS estimated the cap this fiscal year as nearly $162,000, which advocates criticized as locking out care at nursing facilities that might charge $1,000 each day.

In response to questions from the Examiner, Green noted that provider capacity in more traditional facilities is always being worked on and that direct care workforce shortages are “real.” He said DHHS continues to try to be creative with providers to meet needs.

Green said his division is reviewing “well over” 300 comments received on the proposal. Under state law, he said, the state must categorize the responses and address whether changes would be made.

“We are evaluating each and every one of those [comments] in all sincerity,” Green said.

Green said the “drop-dead deadline” to submit the state’s waiver to the federal government for renewal is around March 1. He said that leaves a “little room” in which DHHS could make changes and allow another 30-day public comment period.

Many families say they’re hoping that happens, though they note time is ticking.

“This is not about decreasing services or decreasing any quality in care,” Green said. “It’s really about making sure that the hours that we do authorize into a family’s home are based on need and that we have enough resources to go around for everybody so that the program continues to be sustainable.”

‘Restrain Massive Cuts’

State Sen. Machaela Cavanaugh of Omaha introduced Legislative Bill 958 this year. It would require DHHS to “collaborate” with the Legislature around Medicaid waivers for Home and Community Based Services. 

If passed, DHHS would need legislative approval to request a waiver that would introduce an individual cost limit, reduce service hours or narrow eligibility. The bill also would define “nursing facility level of care” as care for which a Medicaid recipient requires assistance with two or more activities of daily living, regardless of the cost.

“It is to restrain massive cuts to developmental disabilities and to ensure that we as a state are doing our utmost to protect this vulnerable population and ensure that they are able to live the full lives that we want them to, and, to the best of their ability, to do it at home when possible,” Cavanaugh said of her bill.

Cavanaugh, a former HHS Committee member who now sits on the Legislature’s budget-writing Appropriations Committee, said she understands some of the waiver changes stemmed from a state audit that found some fraudulently paid DHHS claims.

However, she argued that “sweeping” changes aren’t needed after “a failure of the system to catch errors.” She said investment and training in DHHS would be a better solution.

‘Not Just Numbers On A Page’

Susan Samuelson, “Nana” to her grandson Hunter, who also has Duchenne muscular dystrophy, helped organize and spoke at last week’s rally. She said the proposal would lead many families to consider institutionalization, contrary to U.S. Supreme Court case law and federal law requiring states to provide services so people can live in the “most integrated setting appropriate.”

Samuelson said private providers are “critical,” but when loved ones are stepping up to provide care, that’s not a “luxury” but a “lifeline.” Samuelson also helps lead the new organization “Nebraska Rare,” which focuses on empowering families affected by rare diseases.

“These proposed Medicaid changes are not just numbers on a page,” Samuelson said last week. “They represent real people … real families and real lives.”

She said it’s not trimming the budget but trimming the safety, dignity and independence of some of Nebraska’s most vulnerable neighbors.

Richard Troia, president of Special Sitters, a licensed home health agency serving Omaha and surrounding areas, said he worries about a “domino effect” in which fewer reimbursable hours mean fewer caregivers and fewer options for families, leading to weakened families and increased institutionalization.

Samuelson said families and advocates can’t accept the changes and won’t stop fighting. She described the changes as “a bigger deal than just our disability community.”

“This affects everybody in the state, and we should all have humanity as our No. 1 objective for those who generally cannot advocate for themselves,” Samuelson said.

Hansen said his message to concerned Nebraskans is, “I’m on their side.”

“I’m going to fight for it,” Hansen said. “I’m going to find one way or the other to help make sure that we don’t get this cut.”

Proposed Waiver Changes

Maximum reimbursable caregiver hours, reduced from 112 hours to 70 hours.

No more than 40 hours could be paid to an in-home family caregiver.

An additional 30 hours could be added, but would need to be delivered by someone outside the home.

Maximum reimbursable costs each year are based on yearly nursing home costs, which were $92,438 as calculated by DHHS.

Families would need to undergo an administrative review when costs reach 150% of the annual cost ($138,657).

Families could be paid as much as 175% of the cost of nursing home care if they pass a clinical review from a DHHS team ($161,767).

(Nebraska Department of Health and Human Services)

Aged And Disabled Waiver Eligibility

Be eligible for Nebraska Medicaid.

Have a disability or be over the age of 65.

Meet Nursing Facility Level of Care.

Demonstrate need for services.

For More Information: https://dhhs.ne.gov/DD%20Documents/Eligibility%20for%20AD%20Services.pdf

This story was published by Nebraska Examiner, an editorially independent newsroom providing a hard-hitting, daily flow of news. Read the original article: https://nebraskaexaminer.com/2026/01/20/families-urge-lawmakers-dhhs-to-stop-medicaid-waiver-caps-for-nebraskans-with-disabilities-elderly/